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Equity & Gifted Children: A Father’s Perspective

Dr. Donald Easton-Brooks, School of Education Dean at the University of South Dakota, shares his first-hand experience with the inequities gifted students and their families face.
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2016 Cohort: Rock Chalk To the Stars

Every May our esteemed KU Department of Special Education moves through a natural maelstrom as the end of the spring semester approaches.  In keeping with tradition–Hawk Hopes Blog annually begs, borrows and ultimately “steals” the [now…less than] “freshest” batch of first year doctoral students away from their nail-biting probationary reviews [and a couple of other intensive assignments]. They are badgered for weeks to share their initial experiences before they wrap-up a very intensive first year. Their musings and images below make one thing crystal clear: our first year students know how to keep on “keeping on”– Ad Astra Per Aspera: To the stars through adversity.

ROCK THAT CHALK KU SPED JAYHAWKS ###1 !

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Sarah Roberts

Word: Venture

mountainsBefore starting this program, most of my free time was spent in the mountains, climbing, camping, and working on my Chaco tan lines. When I moved to Kansas, I thought the mountains were a thing of my past. In some ways, this is true. There are no “14ers” to conquer anywhere near here. However, my first year in the PhD program has paralleled that of the hikes that I so enjoy. At the beginning of the year, my hopes were quite high and my outlook optimistic. With one month left of the school year to go, I feel like I am on my 100th switchback, exhausted and questioning why I thought this would be a good idea in the first place. I know that just around the corner is the end (of the semester). And the end always brings an amazing feeling of accomplishment, pride, and awe. And the thought of “look just how far I have come.”

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University of Kansas Special Education Distinguished Professor, Thomas Skrtic

Naheed Abdulrahim

Word:  Inspirational

My first-year experience has been characterized by supportive relationships with faculty, staff, and fellow students and the opportunity to explore my research interests within the field of special education.  While it has been challenging, the rewards of knowledge, skill building, and friendship have brought me great joy along the way.  I am looking forward to the next phase of the journey.

Sheida Khamsi

Word: Limitlesslimiltess

A single word I would use to describe my first year in the doctoral program is limitless. Throughout this year, I have had opportunities to expand my way of thinking through collaborations with individuals who are truly leaders in the special education field within which I have dedicated my short, professional career. Although, most of the time these opportunities have come from my persistence in asking for more work as someone wise once advised me to do! Ultimately though, my choice to come to the University of Kansas has been one of the best I have ever made for my present and future roles in improving quality of life for individuals with disabilities. As such, I maintain that “the sky’s the limit” on the 5th floor of Joseph R. Pearson Hall, a notion continually endorsed and supported by faculty, staff, and students. I am grateful for the limitless opportunities that have come my way this year and cannot wait to see what awaits me in the next.

Vidya Munandarterrified

Word: Exhilarating!

This my first year as a doctoral student but my third year with KU SPED department because I pursued my master’s degree here too. Somehow I felt as if I was being reintroduced again to the KU SPED family. The more I get to know my “family” here, the more I am grateful for this experience. I am blessed for being able to pursue my dream not only with one of the best programs in the country, but also with the most supportive people who are passionate about what they do. I can’t wait to learn more from my teachers and friends here and contribute to education field! I really am proud to be a part of KU SPED family. I hope I will make KU SPED family proud of me, too!

Courtney Wilt

Word: Encouragement

This year has surpassed all my expectations for what it might hold.  I’ve learned to welcome the complexities and controversies of special education – and to be able to join dialogue in new ways!  I’ve learned more about myself and my potential as a scholar.  Above all, I am deeply grateful for the support of my classmates, professors, and advisor.  I’ve grown to love KU. I am proud when my daughters cheer “Rock Chalk Jayhawk, Go KU!” at the top of their lungs!

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Ling Zhang

Word: Learning, growth, inspiration, gratitude, frustration

Learning, growth, inspiration, gratitude, frustration, ….. So many words could describe my first year in the KU SPED doctoral program. No matter which word, this year’s experience is bound to become one of the most valuable experiences of my life. There are too many things and people that I feel grateful for, the great opportunity to learn from the most distinguished people in the field, my cohort with whom I study and grow together, and the professors from whom I receive support and encouragement. I have been inspired by their intelligence and commitments every day. Of course, emotional ups and downs have become a part of my life as well as I embarked on this new academic journey. BUT, I feel thankful for how I have grown academically with each day. I am inspired to want to know more and to devote more effort to my work. I believe the following three years will continue to inspire.

Cassie Huntnot rude

Word:  Transforming 

This year pushed me out of my academic comfort zone and forced me to think and work at a higher level. I feel as though I evolved into a true scholar during this process, much as there is still plenty of room for further growth. I really enjoyed the process of overcoming so many obstacles this year, every sacrifice was incredibly worth it. Also, thank you to my cohort, professors, and advisors for their constant support and encouragement.

Christine Dobson christie

Word:  Enlightening (to say the least)

Never put off until tomorrow what can be done, today. It’s a good idea to teach teenagers to do their own laundry. Cohort Sweet 16 FOREVER!

 

 

 

Inna Stepaniuk inna

Word: Transformation

I would never have thought that I could get a chance to write about my first year experience as a PhD student. I still can not believe that this amazing PhD opportunity is happening to me. I feel extremely privileged and honored to be part of this program. It challenges and inspires me every day.

 

Betsi Jackson bonsai

Word: Transformative

Transformation is exciting and new, but also uncomfortable.  I can describe this year with all of those adjectives.  Pruning and replanting makes room for change, so here’s to more uncomfortable and exciting growth next semester!

Grant Allendog

Word: Gratitude 

I have had so many amazing opportunities to learn and collaborate with colleagues and faculty. I am happy for all the experiences I have had at KU. The road may be difficult to travel at times, but through perseverance and teamwork, we can achieve success.

I have decided to share a picture of my puppy, Samson. Although I am grateful for my experiences at KU, I am also grateful for many other things in my life.

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Sami Gross

Word:  Writing

This has been a year of growth.  I’ve experienced growth in reading, writing, speaking, and thinking.  It has been both difficult and exciting throughout the year to dive deeply into exploration in education.

Cassie Barnett

Word: Candor

It is easy to look around a room of exceptional scholars and feel like you are the only one struggling.  For the first quarter, I remained tight-lipped about the stress I was feeling, fearing that it would make me look weak. However, once I opened up to my peers about the challenges of the doctoral program, I felt a huge weight lifted from my shoulders. With candor came camraderie and comedic relief, without which I would not have made it this far.

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Mark Buckman

Word: Grow

This year has been a wild ride! I thought that I was prepared and knew what to expect. I don’t think I could have anticipated how much I would be stretched, pushed, and pulled by my experiences.  Yet through it all, there were so many opportunities to grow. I can’t help but be amazed at how much I have learned and how far I have come, as an individual and as a scholar.

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Grace Leu

Word: PERSPECTIVE

 

Beyond Location: Education for Travellers as an Irish Ethnic Minority

Máirín Kenny, PhD, is a former teacher, principal and educator who has worked for over thirty years with students and parents from the Irish Traveller community, a recognized indigenous ethnic minority within Ireland. Dr. Kenny is currently an independent scholar and conducts commissioned research on equality, disabilities, ethnicity, racism, and sectarianism in Irish education.  Hawk … Continue reading

The Value of Risk and Fun in Growth

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Kathleen, Nathan, and sisters swimming in the backyard

Some of the hardest moments for me as the mother of a medically complex son, now 24, are the way decisions are made about him and his life without any input from me or him. Most recently it was announced at an annual review meeting at his group home that he was found to be at high risk for water activities because of seizures and would not be allowed to attend any water activities with the group home staff. I find this to be extremely limiting.

Nathan has about 20 seizures a month, all under 4 minutes. If he has a seizure in the water he is brought to the side of the pool or pond and laid on a towel where he can easily be attended. I find it sad that these activities which bring him much joy are limited with a passing comment in a routine meeting. I did rally myself to object and ask for a medical review. But I would like to question here, the value of growth and challenging oneself with some risk.

Nathan was born with severe physical disabilities, arthrogryposis multiplex congenita; his extremities were showing that all the bones were there, but the hands and feet were misshapen. Metabolic and genetic work-ups suggested an unidentified metabolic abnormality. More recently genetic sequencing studies have shown a de novo genetic variant that is shared by another child in Illinois. The clinical presentation is similar in that individual and my son. There is neuromuscular delay and seizures. This genetic variant also explains my son’s need for insulin.

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Nathan swimming with dolphins in Florida

I don’t know how the other family has chosen to care for their son. We kept Nathan with us and pursued any activities which brought him joy. He gets a lot of physical therapy, because he likes to move. He loves to swim. This began when he was about 4 months of age in an above ground pool in the back yard with his 3 older sisters. His oldest sister looked into swimming with the dolphins when he was 5 and we went with another family to Florida to do this. There is a theme here which I think is apparent. Not only is it easier to move in the water, but there are others around one swimming, laughing, shouting, having fun.

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Nathan swimming with dolphins in Florida

Nathan rarely has a seizure in the water, I think because he is having fun. His seizures are often startle seizures that happen as he is waking up. He will tune out when he is bored or tired. If he is engaged in an activity he enjoys he seems to have less seizures.

His elementary school engaged the services of an agency that helps people with disabilities join others their age in snow activities and water activities. He was able to use a paddle boat and swim and also to snow ski and go ice skating. Later in his elementary school life his aide took him swimming at the local “Y” once a week.

Who should have the final say in this risk? The group home staff? The agency overseeing the Group Home? The Department of Public Health? His medical providers? Nathan? Myself, his guardian and medical advocate? Nathan can express his preference with eye gaze. He does this to choose movie or music activities, or to read a book, or to take a walk, or to vote. Do we have different standards to evaluate risk in people with disabilities? Is it not age appropriate for young men to choose some risk in their activities? Is he not allowed to have some fun?

The seizures are scary to witness. They only go on for a few minutes, never over 4 minutes and generally are 1-2.5 minutes. Nathan can turn blue. He used to quickly recover. Now he can need oxygen for 15 minutes or so to regain good oxygen saturation levels. Medical providers have stated that it is OK to have oxygen saturation levels in the 70’s for 5-10 minutes before beginning the oxygen supplementation. For Nathan oxygen saturation levels from 85-95 are desired. But it is the fear factor that seems to complicate this whole discussion.

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Nathan swimming as a toddler

Nathan has always enjoyed swimming or riding in a canoe, or swimming with the dolphins in Florida. He always has an attendant or two with him. Are we limiting Nathan’s time in the water or on the water because it is risky for him or because the caretaker does not want to experience fear? Nathan has been swimming for 24 years without issue. This is clearly a risk that can be dealt with safely. And water activities have provided Nathan with much enjoyment over the years and even helped his strength and flexibility.

It has been suggested to me that this decision is based on liability issues. This may be true. There are no answers coming from the group home or the agency which oversees the home. I have no way of knowing how this decision was made. But I do know my son. He enjoys swimming, the risk involved can be anticipated by swimming in waist deep water for the attendant where it is easy to contain him if he has a seizure. The potential risk is worth every moment of joy in the water. How do we want children like Nathan to live? How does Nathan want to live is an even better question? I question all of us to look at how we arrive at these decisions that affect those we care for. For myself, as a parent and as a physician, I try to honor the wishes of the individual whenever possible.

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photo (1)Kathleen Grandison, MD, has practiced Family Medicine for over 40 years.  She is now working in Urgent Care.  She is the mother of 4 children, ages 24, 27, 31, and 36.  The last child, Nathan, was born with severe disabilities and is now living in a group home for Medically Complex Men.  Kathleen lives in Western Massachusetts.

“Much More Than Just Music”: Ways of Learning in the Krip-Hop Nation

kriphop-old-logoLeroy Franklin Moore Jr. is a Black writer, poet, Hip-Hop\music lover, community activist, and feminist with cerebral palsy. Born in 1967, Moore is a native upstate New Yorker now living in and working from California. In a recent phone interview with Sorcha Hyland for Hawk Hopes Blog Moore reminisces on the world he grew up in and the impact it has had on his art and his work. He begins by describing his father’s huge record collection which filled the family basement. Moore spent hours playing music and looking at album covers. As a child with a physical disability, he was particularly taken with the many records he found by Black artists with disabilities.–

Walter Jackson, Robert Winters… a lot of blind artists. At the time I didn’t know but it really gave me support to deal with the lack of anything in the school district around disability. Back then it was in late 70’s early 80s- way before the IDEA or ADA had any effect. It really forced my teachers to recognize disability as a culture. Those records really gave me the strength to take it forward. It got me into Hip-Hop when Hip-Hop started.

jackso_walt_speakhern_102bThe memory is evocative if not, in part, metaphorical for Moore’s life-journey to date. Much of his work seeks to uncover and promote the histories of Black musicians and artists with disabilities in the United States. This journey has also included building networks with other musicians with disabilities internationally, as Moore shares later in the interview. In a world over-saturated with images of Whiteness and able-bodied people—this journey to center disability, and its intersections has not gotten any easier.

Stevie_Wonder_1973

 

Moore disseminates and discusses his music archives and related findings at academic events such as the one that brought him to the University of Kansas (KU) last October. As a guest lecturer in the  Disabilities Studies Seminar at the Hall Center for the Humanities Moore presented a pantheon of well-and lesser-known Black artists with disabilities. The stories, photographs, old films and recordings that he shares throw ableism, racism, poverty and the interwoven [White] histories of slavery, eugenics and capitalism in the United States into high relief. The visceral and sensual nature of the “data” he collects perforate academic discourses and historicity in creative and emotive ways. Just like his father’s album covers, stories of Black disability and musicality offer us powerful tools to expose the ubiquitous and silent construction of White, able-bodied “master” narratives while simultaneously re-constructing them (Lorde, 2003).
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Moore’s teenage years in New York also coincided with the emergence of Hip-Hop culture. This world is brilliantly captured in a recent StoryCorps interview with Krip-Hop Nation co-founder, Keith Jones—for The Disability Visibility Project.

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a04a8e43e586a529835a5d4a75844f1dThe young male and female artists who performed and partied on the street corners of the South Bronx and Brooklyn created these ciphers—DJs hooked their audio mixers into whatever available electrical wiring they could find. Vinyl became the raw material for spinning and scratching new sounds to accompany the improvised spoken word of the “MCs” (Masters of Ceremonies or Mic Controllers)—later referred to as rappers (Newman, 2005). Break-dancing and graffiti art were also critical elements of the culture, deepening Hip-Hop’s roots as a collaborative and performative art form of youth-led resistance to over-policing, racism, and generational poverty. Yet, as the “Black Kripple with the walkereven though Moore was artistically savvy— the Hip-Hop hierarchy denied him access to the cipher’s center field. As Moore shares,

I saw it on the corners before it went to MTV… I used to go to the ciphers in the Bronx…At that time, people in the ciphers were like huge – big strong men you know. And here I am with my walker, walking up. So I wasn’t empowered to be in the circle. I used to stand out. A couple of people realized, “Hey we should have Leroy be the patrol person when the cops are coming. Because the cops will do nothing with a disabled guy on a walker!” So I used to watch out for the cops. When they would pull around, I’d call “Poe Poe”.  They’d scatter and leave me there with the walker and the cops would look at me and just decide “oh whatever”.

Rather than deter Moore, this clearly propelled him to ultimately find his own voice leading him, with Keith Jones, to co-create what they termed “Krip-Hop Nation” in 2007.

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Krip-Hop Nation with the 5th Battalion Entertainment of L.A., led by DJ Quad, a Hip-Hop artist with a disability and Emmitt Thrower, a retired NYPD officer turned filmmaker and playwright, also with a disability, produced this CD.

In keeping with original Hip-Hop culture, Krip-Hop seeks to artistically amplify political resistance to police brutality as evidenced in this US-UK Krip-Hop mix tape compilation pictured above, Broken Bodies: PBP: Police Brutality ProfilingMoore also has no qualms expressing his frustration with Black Lives Matter! Despite the mass re-mobilization of Black activism Moore remains concerned. Much as local chapters of Black Lives Matter! strive to center race with related intersections, Moore has struggled to have his work—particularly in relation to disability and policing—recognized by the national BLM leadership ranks. He says,

I think things have gotten worse. Disability isn’t seen as a popular issue so it does not get encompassed in big movements we see around police brutality. It doesn’t make sense that we keep getting left out. BLM haven’t responded to our Krip-Hop work or police brutality work. I  am one of the founders of Sins Invalid– we used to reach out to BLM and had one conversation but till this day BLM has not gone deeper into Disability Justice or the work of one of its leading organizations, Sins Invalid. They also have not responded to the police brutality work that I do with POOR Magazine, Idriss Stelley Foundation  both in San Francisco, or Advance Youth Leadership Power of Chicago  and The Harriet Tubman Collective  who un-released its statement last year regarding the Movement for Black Lives’ policy platform.  The Movement for Black Lives, also known as BLM, launched its policy initiative August 1st, 2016, which highlights the disparities of Black Americans and provides a blueprint to stop the violence and oppression that Black people experience through six policy demands. Though the platform received a lot of praise surrounding its efforts, there was a significant aspect missing:  the inclusion of the Black deaf/disabled experience, and how racism and ableism intersected for those who held membership within both marginalized identities.   

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Leroy Moore with Al Osorio at the San Francisco Federal Building protesting the death of Kayla Moore (1973-2013). She was a Black , transgender woman, published poet, and highly gifted, with a mental health disability. Kayla Moore was killed while in the custody of the SF Police Department, who had no legal basis to justify her arrest.

Over the course of a life-time of independent research and column-writing for alternative media outlets such as POOR Magazine—Moore’s work highlights the extent to which musicians with disabilities face multiple forms of oppression. Krip-Hop requires its listeners and supporters to reflect on what unites and differentiates artists with disabilities worldwide, and where and what experiences of discrimination are shared. Krip-Hop as a musical genre, and an international network, offers a malleable and migratory medium for this message. Unlike language or the formalities of the written word, Krip-Hop requires no translation and it is rooted in what Moore refers to as the pre-MTV Hip-Hop foundation. It is built on the beat, and on the cadence, inflection and enactment of the spoken word in resistance to systemic forms of injustice and oppression. As an oral art-form, it has a transformative, collaborative and performative capacity that academic writing and more conventional forms of information-sharing simply cannot facilitate.

Krip-Hop’s power manifests in how it has enabled Moore to extend his own activism and agency internationally. As a network, it moves beyond defining membership or leadership on the basis of any one form of identity or US-centric experience, to seeking solidarity transnationally. It is inclusive of all who share diverse experiences of disability injustice, but more critically uses various performative acts to resist injustice publicly and regardless of what media or audience pays attention.

krip-hop-kore-krewThe network’s tagline—‘Krip-Hop is more than just music’—speaks to this broader scope and the communal power in its live and theater-like engagement. As Moore writes—

Krip-Hop is a community as well as a style of music, an artistic space where people with disabilities can speak out and speak back to the social structures that exclude people based on disability, race, sexuality, and a host of other marginalized identities…Krip-Hop’s mission is to educate the music, media industries and general public about the talents, history, rights and marketability of Hip-Hop artists and other musicians with disabilities from Blues to Hip-Hop internationally. Krip-Hop’s main objective is to spread awareness about the history, arts, and the “isms” facing musicians with disabilities along with putting our materials into the hands of media outlets, educators, scholars, youth, journalists and hip-hop conference coordinators.

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Painting by Carina Lomeli, 2016. Featured on the front album cover of Moore’s recent release “The Best of Krip-Hop Nation” (Various Artists).

Krip-Hop Nation, like academic research, is built on a solid theoretical framework. It has seven specific standards. According to Moore, Krip-Hop artists “try to”:

  1. Use politically correct lyrics
  2. Not put down other minorities
  3. Use music to advocate and teach not only about ourselves but about the system we live under
  4. Challenge mainstream and all media on ways they frame disability
  5. Increase voices that are missing from within and in the popular culture
  6. Recognizing our disabled ancestors, knowing that we are building on what they left us and nothing is new just borrowed
  7. Know that sometimes we fail to meet the above standards but we are trying.

International Krip-Hop chapters are led by Moore with Keith Jones and Rob Da Noize Temple in the US,  Binki Woi of Handicapped-Art-Works in Germany, Lady MJ Warrior in the United Kingdom and Ronnie Ronnie in Uganda. Along with various artists with disabilities from South Africa. Krip-Hop Nation has also just released a new album to mark the network’s tenth anniversary. Xóchitl Justice Press will publish Moore’s children’s book, titled Black Disabled Art History 101, later this year and Moore also recently published a collection of poetry titled Black Kripple Delivers Poetry & Lyrics.

Leroy Moore and Keith Jones

Leroy F. Moore Jr. and Keith Jones, co-founders of Krip-Hop Nation, 2007.

As scholars and academics in a social science field like special education what—if anything—do we stand to learn from paying attention to the work of community activists and artistic visionaries like Leroy F. Moore Jr? How might Moore’s story resonate in relation to wicked problems like disproportionality and the representation of students of color in special education? How might public school curricula benefit from incorporating the tenets of the Krip-Hop Nation? Moore actively sought to engage in the learning process as a child in the public education system—he wanted to acquire knowledge. Yet he experienced nothing that spoke to his identities. Even within the Hip-Hop culture he grew up with and continues to embrace, he had to move beyond its able-bodied and exclusionary constructs of Black masculinity and create his own more equitable “nation” space. As students and professionals operating in a regressive and draconian political climate for public education, and as all the eyes in the country continue to navel-gaze on the shortcomings of the current president, what do we stand to gain from the tenets of Krip-Hop? We close this blog by pointing to Moore’s etymological definition of the term “Krip”as one possible answer to these questions—

The last but important concept of Krip-Hop Nation is the title. Why Krip with a K? Like I wrote above, Krip-Hop Nation is more than music and “bling bling”, it is about advocacy and education and taking back what has been taken from us to oppress us. Language…was taken from people with disabilities and the language was turned on us to oppress us. Before people with disabilities had civil rights, a movement and the Arts, many placed labels on us like “crazy”, “lame”, “cripple”, and “retarded” etc. Of course, now with our civil rights and disability studies and culture, we have named ourselves and have used the negative terms to our own benefit to not only shock people but to respect that these words are our history and we must reclaim them. After realizing that the term Crip has a long history of negativity in being used for Black gangs in L.A. (The Crips & The Bloods)…I wanted to again reclaim the term Crip to advocate and educate with a proud framework of the music and struggles of Hip-Hop artists with disabilities. Just like in Hip-Hop you turn something that the so-called mainstream has discarded with a fresh spotlight thus changing the C to a K in what we know today as Krip-Hop.  

—Sorcha Hyland

Bio

Leroy F. Moore Jr. is a Black writer, poet, Hip-Hop\music lover, community activist and feminist with a physical disability. He has been sharing his perspectives on identity, race and disability publicly for the last 13 years. His work began in London, England where he discovered the Black Disabled Movement which led to the creation of his lecture series titled, On the Outskirts: Race & Disability. Leroy is co-founder and former community relations director for the Sins Invalid performance project. Leroy is also one of the leading voices around police brutality and the wrongful incarceration of people with disabilities in the United States. In 2015 he helped to produce the documentary Where Is Hope, which centers on police brutality against people with disabilities. He is also the creator of Krip-Hop Nation and produced the Krip-Hop Mixtape Series. Leroy is currently writing a Krip-Hop book. In 2015, Poetic Matrix Press published his poetry collection, The Black Kripple Delivers Poetry & Lyrics, and he has also released poetry on CD including titles such as Black Disabled Man with a Big Mouth & A High I.Q. and The Black Kripple Delivers Krip Love Mixtape. In February, 2017 he released the Krip-Blues Stories on EP, and later this year he will publish his children’s book, Black Disabled Art History 101 with Xóchitl Justice Press.

References

Lorde, A. (2003). The master’s tools will never dismantle the master’s house. Feminist postcolonial theory: A reader, 25, 27.

Newman, M. (2005). Rap as literacy: A genre analysis of hip-hop ciphers. Text25(3), 399-436.

 

A Tribute and a Charge

Ever since I discovered the independent living movement, Ed Roberts has been one of my heroes.  For those unfamiliar with Ed Roberts, he was the determined man with quadriplegia due to post-polio syndrome who, back in the 1960s, successfully advocated for his right to attend the University of California at Berkeley even after the administration told him that “[W]e tried cripples and it didn’t work” (Shapiro, 1994).

He was the student who tired of living under the strict rules of the campus hospital where the university housed him when he insisted on his right to enroll. Roberts then found ways for himself and other students with physical disabilities to fully participate in campus life as nondisabled students did (Levy, 1988).

He was the advocate who used his personal experience to start the first collegiate Disabled Students Program in the nation (United Spinal Association, 2015), which morphed into a community “independent living center” to empower others with disabilities to live in the community at a time when institutional life for people with severe disabilities was the norm. This center spawned a movement and a network of independent living centers in over 600 communities across the nation that continues to grow internationally (e.g., Barnes, 2016; Hayashi & Okuhira, 2008).

Graphic image announcing the annual National Council on Independent Living Conference. It says: Revolution: A Global Independent Living Movement. Annual Conference on Independent LIving 2017. The "O" in the word "Revolution" is an image of the earth with a little red heart on it.

He was the leader who became director of the California state rehabilitation agency, after his vocational rehabilitation counselor advised him that he was unemployable (Shapiro, 1994).

He was the visionary who, with others, founded the World Institute on Disability to advance independent living and disability rights worldwide and who won a MacArthur Genius award for this work (World Institute on Disability, n.d.).

Image of a globe with the words "World Institute on Disabiity and the acronym "WID".

I was impressed with Roberts’ refusal to assume the “victim” role, after being referred to as a “polio victim” by talk show host Larry King (Goldfarb, 1995). His realization that gaining an education would be the key to his independence and freedom (Shapiro, 1994) made a big impression on me at a time when I was struggling to find my own identity as a person with a disability. I understood his life as a grand statement that people with disabilities should be granted accommodations in their academic programs and in the workplace, so that they can be fully participating and contributing members of society.

My admiration of Roberts, and my own experiences of negotiating academia with a disability, have led me to serve as campus advisor for the University of Kansas campus group to raise awareness of disability issues, AbleHawks and Allies. Through this group, I have been honored to work closely with many students, disabled and nondisabled, who are committed to improving the campus climate for students with disabilities, and to creating a more accessible society for all.

However, as more and more students with disabilities arrive on campus, which I attribute to the combined successes of the Individuals with Disabilities Education Act (IDEA) and the independent living and disability rights movements, I reflect on the barriers that many of these current students face. They are different and more complex than those that Roberts faced. His disability was very tangible, as evidenced by his physical paralysis which resulted in his use of a power wheelchair and portable ventilator. The types of accommodations that Roberts needed were quite clear, in terms of accessibility of the built environment and support from note takers, for example.

Yet, many current postsecondary students with disabilities experience conditions that are much less visible, and that make their need for accommodations less evident but still critical. Members, including leaders of AbleHawks and Allies, have experienced a variety of hidden disabilities such as learning disabilities, autism, traumatic brain injuriespsychiatric/mental health disabilities, and juvenile rheumatoid arthritis. These students’ needed accommodations are often more individualized than a building ramp or providing a note taker. Accommodations that may include the need to withdraw from settings due to overstimulation, the need for support to organize schedules and activities, or the need to interrupt one’s studies due to medication changes may be less likely to be understood as vital to their academic success and well-being.

Still, their achievement and, very likely, their future employment success depends, to some degree, on obtaining accommodations to level their playing fields.  My hope is that these students are able to achieve the same degree of support and accommodation that Ed Roberts was able to obtain, and that academia affords these students the same opportunities that those with more visible disabilities have received.

“Everyone has a future”–Ed Roberts declared this as a basic tenet of the independent living movement (Research and Training Center on Independent Living, 2006). As we celebrate and preserve his legacy, I ponder how we can all work to assure that postsecondary students with any type of disability receive the accommodations needed to assure their present and future success? It is a charge that we owe the man who refused to accept the limitations that others placed on him. Thanks, Ed.

 

References

Barnes, C. (2016). Independent living, politics, and policy in the United Kingdom: A social model account. Review of Disability Studies: An International Journal, (1)4.

Fleischer, D.Z., & Zames, F. (2001). The Disability Rights Movement: From Charity to Confrontation. Philadelphia: Temple University Press.

Goldfarb, L. (1995). Free Wheeling – People in Motion: Ways to Move. Princeton, NJ: Films for the Humanities and Science. Retrieved from http://mn.gov/mnddc/ed-roberts/freeWheeling.html

Hayashi, R & Okuhira, M. (2008). The independent living movement in Asia: Solidarity from Japan. Disability & Society, 5, 417-429.

Levy, C. (1988). A people’s history of the independent living movement. Lawrence, KS: Research and Training Center on Independent Living Center, University of Kansas.

Research and Training Center on Independent Living. (2006). Ed Roberts: His Words, His Vision. Lawrence, KS: Research and Training Center on Independent Living, University of Kansas.

Shapiro, J.P. (1994). No Pity: People with disabilities forging a new civil rights movement. New York: Three Rivers Press.

United Spinal Association. (2015). Ed Roberts: Disability Rights Advocate with Polio. Retrieved from http://www.spinalcord.org/resource-center/askus/index.php?pg=kb.page&id=2600

World Institute on Disability. (n.d.). Meet Our Founders. Retrieved from https://wid.org/about/founders/

 

Profile photo of Dot NaryDot Nary received her doctorate in developmental and child psychology from the University of Kansas, and is an assistant research professor at the Research and Training Center on Independent Living at KU.   Prior to pursuing graduate studies, she worked at several centers for independent living in upstate New York and was active in promoting passage of the Americans with Disabilities Act. Her research interests focus on community participation, home visitability, access to recreation, health promotion and advocacy training for people with disabilities, and on creating accessible communities for all.  She has been active in the Disability Section of the American Public Health Association, serves as staff advisor to AbleHawks & Allies, the KU student group that works to increase disability awareness on campus,and has taught courses on disability and social change at several universities.

Finding Hope

On November 9, 2016, we all woke up to a different reality than we might have imagined the morning before the presidential election. I was asked to write this blog post prior to the election and to explore what the new presidential administration would mean for special education and disability. At the time I was asked to write, I began to plan and outline what I would say. After the election, I took a long time to return to writing this blog because, honestly, I have no idea what the new presidential administration will mean for special education and disability. Let’s just get that right out there up front. I have no earthly idea what kind of impact this next presidential administration and Congress could have on special education and disability law in our country.

Sure, I could wax eloquent for a few paragraphs on the impact that school vouchers could have on students with disabilities. I could write an obituary for the Office for Civil Rights and what that could mean for enforcement of special education and disability law. But the truth is, those of us in the special education community have already discussed these things ad nauseam with each other and with our poor significant others and friends who are not in the special education community. None of us really know what the next four years will bring to special education and disability law and policy. Often I feel like the best thing for special education and disability law and policy would be for the next presidential administration and Congress to leave it alone. The status quo could be better than unknown changes. This may be hard to believe, especially after the way I have started this blog post, but I actually have a lot of hope for special education and disability law and policy over the next four years. I have hope because of two things: potential change we may see from the U.S. Supreme Court and our ability to effect change at the state and local level.

For those of you who have followed the U.S. Supreme Court this term you already know that this is an incredibly exciting time in special education law. This past fall I told my special education law students this nearly every week. During the fall semester these students had the privilege of diving into court briefs from two special education cases before the U.S. Supreme Court – Fry v. Napoleon Community Schools and Endrew F. v. Douglas County School District. You may have heard Fry referred to as “the service dog case” or the case with “Wonder, the Goldendoodle.” Fry is actually not at all about whether a student has a right to be accompanied by a service dog at school, but whether the Frys should have exhausted their administrative remedies under the Individuals with Disabilities Act (IDEA) even though they are not bringing their lawsuit against their daughter’s former school district under the IDEA, but are instead bringing it under the Americans with the Disabilities Act and Section 504 of the Rehabilitation Act, and they are seeking a remedy not available under IDEA.

As if discussing the exhaustion of administrative remedies under the IDEA is not enough fun for all special education policy geeks, the U.S. Supreme Court did us the favor of taking a second IDEA case this term. The Endrew case could arguably be the biggest IDEA-related case of our careers, for those of us who were not around when the Rowley case was decided. The question before the U.S. Supreme Court in Endrew is what level of educational benefit a student with a disability is entitled to receive through a free appropriate public education. When you read this blog post, I hope that you will be spending your days and evenings dissecting the oral arguments that took place on January 11, as I will be. The Court seemed dissatisfied with the language used by the 10th Circuit to describe the FAPE standard, “merely more than de minimis,” but did not seem impressed by much of the proposed language suggested by the parents’ attorney or the attorney representing the Solicitor General. We will all look forward to the U.S. Supreme Court’s decisions in these cases and what they will mean for our work. I am very hopeful that the outcomes of these cases could have a very positive impact on special education and disability policy.

I am also hopeful about the impact that we could have on special education law and policy at the state and local levels. Many of us may be unsure about the impact we could have on federal special education and disability policy, but I think there is a real opportunity to have an impact here in Kansas. There are many new members of the Kansas Legislature, including many current and former educators. The special educators who work and learn atop Mount Oread have so much to offer the Kansas Legislature and the Kansas State Board of Education. I hope you all – students, faculty, alumni, and friends feel encouraged and empowered to take your ideas and your research to the Kansas Legislature and the Kansas State Board of Education to help make special education better here in our great state. Wherever you live and work you should also consider taking your knowledge and your expertise to your local school district and talk to them about your ideas for improving special education. We should all work harder in the next four years toward bridging the gap between research and practice.

As you look ahead over the next four years I encourage you all to feel as hopeful as I do. Follow the Fry and Endrew cases and think about what the outcome of each could mean for your work. Follow state and local education issues and actively seek out your state senator, representative, and state and local board of education members. Talk with them about how we can improve special education in our state. Let’s not sit back and see what will happen to special education and disability law and policy over the next four years. Let’s work to make a difference right where we are, right now.

 

 

 

Laura Jurgensen is an attorney with the Early Childhood, Special Education, and Title Services team at the Kansas State Department of Education and teaches Law and Special Education at the University of Kansas. Laura earned her J.D. at Washburn University School of Law and did her undergraduate work in elementary education at Pacific Union College in California. She is thrilled to have accidentally fallen into a career in special education law. When she is not reading cases and OSEP letters, she and her husband are chasing their two toddler boys and loving (nearly) every minute of it.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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